5
Nov

Why it’s Important that Obama Wins 

I want to remind people especially those suffering from ME/CFS, HOW IMPORTANT IT IS that Obama wins the election tomorrow. 

Hopefully you know the story of how Courtney Miller asked the President last year in Reno to help her husband Bob Miller (who suffers from Chronic Fatigue Syndrome.) 

Here is the video of Courtney asking the President for help:

About a year later the President responded to Courtney Miller’s request. 

Here is a link to that letter: http://phoenixrising.me/wp-content/uploads/President-Obama-Letter-on-CFS.pdf

Do you see how huge this is? I’m not very good at explaining things, but Obama cares about us. He cares about the funding of this terrible disease. He even refer to CFS as Myagic Encephalomyelitis in his letter! That in itself is huge! It’s a step in getting the name changed! ProHealth’s Rich Carson explaining the importance very well in his letter to the ME/CFS patient.

Courtney Miller’s emotional plea to the president opened the door to change and resulted in two things that ME/CFS patients have never had: respect and validation. President Obama not only took the time to study ME/CFS thoroughly, he proved it by referring to the disease as both Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, showing that the highest official in the nation knows that CFS and Myalgic Encephalomyelitis are indeed the same disease. 

The President responded by asking the nation’s top health officials to look carefully at ME/CFS to see if the government can do more. And he still wants more feedback. Because of this, patients have the opportunity to be heard by the President of the United States about the disease that has cost us so dearly. We are finally looking at a golden opportunity to right two monstrous wrongs at the same time: to get fair funding, and to change the trivializing, degrading name Chronic Fatigue Syndrome to the medical name that has been used for 60 years in more than 50 countries - Myalgic Encephalomyelitis. It is time for the hurtful, humiliating ‘fatigue’ label disappeared forever. 

There you go people! Vote Obama tomorrow if you want to see more funding in the CFS community! I know I’m voting for him! 

(Source: prohealth.com)

11
Sep

The Most Important Two and a Half Minutes in ME/CFS History  


Dear ME/CFS Patient and Loved Ones, 


Courtney Miller had her question ready to go for President Obama during a 2011 presidential visit to Reno, Nevada. On that fateful afternoon, the President picked her out of a large audience and was moved by her question: “Mr. President…I’m asking you for my husband and my kids, who want their father to be able to go to their baseball games… if there’s a way to make improvements on the meager funding by the National Institutes of Health into ME/CFS research.” 


Their two-and-a-half-minute exchange marked the first time a president of the United States ever publicly uttered the words “Chronic Fatigue Syndrome”; and it was the first glimmer of hope that government may someday treat ME/CFS with the same respect it reserves for other serious diseases. 

To the joy of patients and researchers alike, President Obama responded to Courtney’s plea in a two-page letter urging the nation’s top federal health officials to elevate ME/CFS on their list of priorities. 

This breathtaking development suggests the government will finally take responsibility for the devastating disease that affects one million Americans and causes total disability in up to 25% of its sufferers. Up to now, the government has avoided facing “CFS” like the plague and funding has been woefully inadequate. This dearth of funding is partly related to the trivializing name that CDC officials gave to the disease 25 years ago, for which patients have had to pay dearly in lost respect and dignity. How could a disease called “Chronic Fatigue Syndrome” be taken seriously enough to garner funding anyway? 

Calling this disease ‘Chronic Fatigue Syndrome’ is like calling Alzheimer’s ‘Chronic Forgetfulness Syndrome.’ As silly and un-serious as Chronic Fatigue Syndrome sounds, it is a deadly serious disease that devastates its victims and renders their immune systems and nervous systems dysfunctional. Sufferers are at an increased risk for developing cancer, heart disease and a myriad of other serious diseases. And these maladies hit earlier in life than in the general population. Labeled malingerers, patients are stigmatized, ignored, and left to suffer on their own. They disappear and become invisible. Many commit suicide. 

Economic Costs of ME/CFS 
Government studies have shown that the economic loss caused by ME/CFS is staggering, amounting to $17 billion a year in lost productivity alone. One government study concluded that the government itself loses nearly $5 billion per year due to lost taxes, Medicare costs, and disability payments. This is particularly interesting because the government spends only $6 million per year to research the disease. Spending $6 million to research a disease that costs American taxpayers billions of dollars is fiscal irresponsibility at its worst. And $6 million is chump change for such an important disease; it’s “go away” money. 

Let’s compare ME/CFS funding to another disease that is similar to ME/CFS in many ways -Multiple Sclerosis. MS affects approximately 400,000 Americans and garners $120 million in government funding. That’s $300 per patient per year - compared to $6 dollars per patient for ME/CFS. That means that Multiple Sclerosis gets 5000% - 50 times - more research funding than ME/CFS! The government has ignored ME/CFS forever. Now that President Obama is involved in the ME/CFS research debacle, I believe that will change. 


The Door to Change is Wide Open
 
Courtney Miller’s emotional plea to the president opened the door to change and resulted in two things that ME/CFS patients have never had: respect and validation. President Obama not only took the time to study ME/CFS thoroughly, he proved it by referring to the disease as both Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, showing that the highest official in the nation knows that CFS and Myalgic Encephalomyelitis are indeed the same disease. 

The President responded by asking the nation’s top health officials to look carefully at ME/CFS to see if the government can do more. And he still wants more feedback. Because of this, patients have the opportunity to be heard by the President of the United States about the disease that has cost us so dearly. We are finally looking at a golden opportunity to right two monstrous wrongs at the same time: to get fair funding, and to change the trivializing, degrading name Chronic Fatigue Syndrome to the medical name that has been used for 60 years in more than 50 countries - Myalgic Encephalomyelitis. It is time for the hurtful, humiliating ‘fatigue’ label disappeared forever. 

You Can Make a Difference Now 
Patients need to seize this opportunity to make this happen. The first thing we should do is write to President Obama to thank him for his interest in ME/CFS - and for his sensitivity and correctness in calling this disease Myalgic Encephalomyelitis. Let him know that you or a loved one has been devastated by ME, and that you appreciate his personal involvement in the disease. Tell him we need funding that is commensurate with the seriousness of the disease, and that the name ‘Chronic Fatigue Syndrome’ degrades its sufferers and must be changed. It’s important that the President realizes that ME affects lots of people - and lots of voters. 

If you prefer, copy and paste the letter below into your e-mail browser and send it to the President at jarrettpublic@who.eop.gov. Please cc a copy to Courtney Miller, too, at the email address provided below. If you can, tell the President how ME/CFS changed your life, and what your life might have looked like if you had not succumbed to this disease. 


I’ve been a patient since 1981 and an activist since I became a support group leader in the mid ’80s. I’ve seen lots of exciting things come and go. But I’ve never seen an opportunity as good as this for patients to see the two most important things we need-research that will lead to a cure, and a new disease name that will help us regain our dignity and the respect of anyone who learns that we have a serious disease that is not a “fatigue syndrome.” They go hand in hand. 


There has never been a better time for patients to make a difference than right now, and the ball is in your court and mine. I hope you’ll join with me by writing to President Obama to thank him for his interest and to let him know that he’s on the right track. 

Wishing you new-found hope and respect,
Rich Carson 
Rich Carson
ProHealth Founder; former support group leader 



Sample Letter

To: jarrettpublic@who.eop.gov
Cc: courtneymiller999@gmail.com
Subject: Thank You for Elevating Chronic Fatigue Syndrome

Mr. President:

Thank you for your kind attention into Chronic Fatigue Syndrome. I am a patient with Myalgic Encephalomyelitis (‘CFS’) and I have suffered hardships at the hands of this disease that most people will never know. I have seen my government disrespect me and other patients by calling our horrific disease by the very un-serious, un-medical name, ‘Chronic Fatigue Syndrome.’ I have seen my government turn its back on a million victims by failing to sincerely try to understand and treat my disease; and I have seen my government ignore common sense economics by spending only a paltry $6 million to fund research for a disease that costs the United States billions of dollars in lost tax revenues, Medicare payments, disability payments, and lost productivity. 

Thank you for elevating the priority of Chronic Fatigue Syndrome, and thank you for encouraging HHS, NIH, and CDC to treat this disease as fairly as they would any serious disease - by appropriating necessary funding that is commensurate with the seriousness of this disease. I also ask that you encourage health officials to change the disrespectful, disparaging name ‘Chronic Fatigue Syndrome’ to the medical name it has been called in most of the world for over 60 years, Myalgic Encephalomyelitis. 

I am certain your leadership will be a turning point in the ME/CFS health crisis affecting a million Americans, and I and my family and friends are deeply grateful for your efforts to give me hope of a life without chronic suffering and pain. 

Sincerely,

Name
State
Number of years ill 

10
Sep

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW 

1. The illness I live with is: Myalgic Encephalomyelitis a.k.a Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome, and EDS Type 3

2. I was diagnosed with it in the year: I was diagnosed with ME/CFS in April or May of 2011 and POTS in November of 2011 and EDS in June of 2012

3. But I had symptoms since: August 2010

4. The biggest adjustment I’ve had to make is: I feel like school has been the biggest adjustment for me… it really put me off track. I was in a lot of advanced courses when I got sick when I was in 11th grade… I was in English Honors, Advanced Trig, French 3, etc…

5. Most people assume: that I don’t try hard enough. That I’m just making excuses…

6. The hardest part about mornings are: waking up. Forcing myself to shove tons of pills down my throat. 

7. My favorite medical TV show is: I don’t watch a lot of TV but I do like Grey’s Anatomy (I know it’s more of a drama but yeah.)

8. A gadget I couldn’t live without is: my iPhone. 

9. The hardest part about nights are: getting to sleep. 

10. Each day I take __ pills & vitamins. I don’t know probably 15+

11. Regarding alternative treatments I: have tried a lot of different things. I’ve tried chiropractors… I’ve tried weird laser therapies, I’ve tried infra-red blah blah blah. Right now the only “alternative” thing I’m doing is supplements but that’s becoming more mainstream as time goes on. Plus I think they do help.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I decide who knows and even though it sucks to “look fine”, I like that I can go on about my business without people pestering me. 

13. Regarding working and career: I have a part time job right now with ProHealth. They are an awesome company and I get to help other people with CFS or Fibro and it’s really an incredible opportunity. I’m so thankful to have this job. I get to set my hours and everything. I work really hard though.

14. People would be surprised to know: that I was an allstar softball athlete before I got sick. 

15. The hardest thing to accept about my new reality has been: somewhat missing out on normal college life. I only take one class on campus… I don’t live on campus, I commute. I feel a little left out of the fun. 

16. Something I never thought I could do with my illness that I did was: At one point, I built up my endurance and strength to the point where I tried out for my high school’s softball team again and I did it… and I was the starting pitcher for them. Until I started crashing. I’m still really proud of that though. Plus it gives me the opportunity to tell any jerk of a doctor that I tried conditioning and exercising to get better and it worked for a short amount of time before I relapsed and became so freaking sick I could barely move. So exercise didn’t cure me. 

17. The commercials about my illness: Non-existent.

18. Something I really miss doing since I was diagnosed is: taking long walks outside… spending the whole entire day out with my friends and having the best time without getting tired or overheated.

19. It was really hard to have to give up: softball… ): I know I keep repeating it and I talk about it pretty much all the time when I reminisce about my past but it meant so much to me. It was my way of getting away from everything and I knew I was good. I had so much confidence when I was on the field. I felt invincible when I played. 

20. A new hobby I have taken up since my diagnosis is: blogging, I play guitar more often, experimenting with make-up, etc. 

21. If I could have one day of feeling normal again I would: that is such a good question. Maybe pitch one more game of softball… just one more game. 

22. My illness has taught me: Not to take things for granted. Also not to let this illness get in the way of my dreams. 

23. Want to know a secret? One thing people say that gets under my skin is: “you know, if you improved your diet you’d start to feel a lot better.” 

24. But I love it when people: tell me that it’s going to be okay. That I’m a strong person. 

25. My favorite motto, scripture, quote that gets me through tough times is: "You never know how strong you are until being strong is the only choice you have."

26. When someone is diagnosed I’d like to tell them: It’s not going to be an easy journey, but I am here for you. There’s a huge community of people that are here for you that will support you through your hardships and your successes. 

27. Something that has surprised me about living with an illness is: I’ve really gotten to know myself as a person better. 

28. The nicest thing someone did for me when I wasn’t feeling well was: send me a message telling me that they know how I feel. 

29. I’m involved with Invisible Illness Week because: I love being involved in anything regarding CFS/ME. I really do hope that one day we will find a cure for this horrible disease so all the people ridiculed by their doctors, family and friends can finally feel validated!

30. The fact that you read this list makes me feel: flattered. (: 

3
Aug

Dr. Susan Levine 

So everyone! I have a lot to update you all on! I made the trip up from Georgia to stay in South Jersey with my Grandma so I could go see Dr. Levine in New York City. Today I went and saw her and it could not have gone better!

She looked through my previous blood work and noted that my Epstein Barr virus titers were high. My HHV 6 levels are also high. So we discussed what lead to my diagnosis, you know all that general info and then we talked about treatments! She wrote me scripts for low dose Naltrexone, Valcyte, supplemental IV’s, and I forgot the last thing. Haha.

But anyway, I knew the EBV was an issue but I didn’t really know too much about the HHV 6 until I looked it up! Apparently…

HHV-6 can persist in the brain tissue long after primary infection and after evidence of the virus has long disappeared from the plasma in the circulating blood.  Therefore, direct evidence of chronic infection is not easily attainable by standard laboratory tests. In other words, even though there is no DNA for HHV-6 (or other herpesviruses such as EBV) in the plasma, it is possible that one of more of these viruses are in fact smoldering in the tissues and throwing off inflammatory cytokines.


So I thought that was interesting! 

Oh and I got a photo with Dr. Levine because I’m weird like that. She’s awesome though, and if you have CFS/ME and have the chance to see her, I’d definitely recommend her. She knows her stuff. 

Excuse how incredibly flushed and puffy my face is. Also no makeup, because who wears makeup to the doctor? Yeah. 

Anyway, that’s how that all went. I’ll keep everyone up to date on how I do on the valcyte, naltrexone, and the nutritional IV’s!

(Source: hhv-6foundation.org)